The World Endometriosis Research Foundation (WERF) and the European Society of Human Reproduction and Embryology (ESHRE) are proud to announce the first ever prospective study to assess the hidden cost of endometriosis to society and to women with the disease.

13 centres in ten countries kickoff the EndoCost study with a goal to identify areas which can be addressed for improvement and subsequent reduction in cost from a very prevalent yet largely unknown disease, which affects women during the prime of their lives.

Endometriosis affects an estimated 1 in 10 women during their reproductive years. An average diagnostic delay of up to 12 years, coupled with “hit and miss” treatments, has put an estimated cost to society in the United States alone at $22 billion a year higher than the cost of migraine and Crohns disease. There are no comparable data yet in Europe, which WERF and ESHRE now seek to address.

Endometriosis is the biggest cause of infertility and chronic pelvic pain in women. All treatments have side effects and there is no known cure. Yet, there is a lack of government funding given to research into a cure or even a long term treatment.

28year old Lisa Gellert has suffered from endometriosis for nine years. “I have seen numerous doctors, and finally had surgery where none of the disease was removed. Despite having supposedly had treatment I still live in pain and take several days off every month because I am incapacitated”, said Gellert.

WERF chief executive, Lone Hummelshoj worries what mismanagement such as Gellerts is costing national healthcare systems. But, it is not about healthcare systems alone according to Hummelshoj “A large proportion of women with endometriosis have to take time off work every month either due to severe symptoms, or because of doctors appointments and treatment regimes. This has a profound effect on society, but most certainly also on the women themselves, whose personal cost both financially and emotionally is substantial. The effect on relationships, not least when fertility becomes an issue, must not be underestimated either! The EndoCost study will be the first ever to investigate this direct and indirect cost, at a societal and personal level. We hope the results will spur national governments on to take endometriosis seriously and invest in research to prevent the next generation of women having to suffer during the prime of their lives the way this generation has”, said Hummelshoj.

Results from the EndoCost study are expected to be published during the second quarter of 2010.

See also endometriosisfoundation.org/endocost.php

Source
Hanna Hanssen